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Planning ahead

Planning ahead is important for people who are dying and for their relatives and friends. It means thinking and talking about how you wish to be cared for in the final months of your life.

Why plan ahead?

It’s important to plan ahead so that you can put your mind at ease, and say those important goodbyes. By planning ahead you will also make the financial, legal and practical consequences of illness and death much easier for your family to deal with.

Here’s a checklist of things that you might like to consider, whether you are facing the end of life now, or you want to plan for your future end of life care.

It’s important to consider the kind of care you would like towards the end of your life. This includes where you would like to die, whether you have any particular worries that you would like to discuss, and whether you wish to continue with any life-prolonging treatment. It's important to do this earlier rather than later just in case you are unable to make decisions for yourself in the future. You can do this by making an Advance Decision. This can be made by anyone of sound mind over 18 years old (16 in Scotland).

What would you like people to know before you die? Are there any messages you would like to leave for those you love? Perhaps you would like to create a "memory box" or a video for your loved ones. The time to do this is while you are still able.

Have you thought about whether you would prefer to be buried or cremated? Perhaps you would like a green funeral rather than a more traditional one. Think about what kind of service you would like, and whether you want it to be more of a celebration of your life than a conventional ceremony. What hymns, readings or music would you like to have, and who would you like to be there? Write this down and give it to someone whom you trust, or put it in your will. Dying Matters has a free and simple form, My Funeral Wishes, to set down what you want for your funeral.

Choosing where to die: advice for relatives

While many of us may want to die at home, sometimes this isn’t possible. For instance, the house may not be suitable, the person who would be the primary carer may be elderly or infirm and other relatives may be unable to offer appropriate care. GPs and other health professionals help people who are dying and their families to select the right place to receive the best care under the circumstances. This can also depend on financial means.

At home

The GP and district nurse will be the main source of support for people at home. Support is also provided by visiting community palliative care professionals and Hospice at Home services.

Hospice professionals work closely with GPs and community nurses to plan and deliver care.

Hospice at Home services allow people to receive hospice care in their own home. This may be care when someone is getting near to the end of their life, respite care (to give carers a break), or it may just be care during a difficult time. Some teams can offer nursing care 24-hours a day.

Hospices and palliative care teams will provide support for carers in the community – for example, through a support and information group or by offering them advice.

Although rewarding, caring for someone at home can be physically and emotionally demanding. You need to think about your own needs. So it is important to find extra help to give you support, and time for breaks and sleep. You can search for these on Dying Matters' Find Me Help.

Hospice

Most hospice care is provided by charitable hospices. There are also a number of hospices that operate in the NHS.

As leading providers of end of life care for many years, hospices have developed specialist knowledge which is accessible to patients, their families, professionals and other carers through a variety of services.

The range of care may include:

Pain and symptom control

Psychological and social support

Palliative rehabilitation – helping patients to stay independent and continue to live their lives as they have done before

Complementary therapies, such as massage and aromatherapy

Spiritual care

Practical and financial advice

Support in bereavement.

Hospices provide care in a number of different places including people’s own homes, day care and inpatient units.

Daycare support

Daycare gives people the chance to spend time in a hospice and get the care and support they need without being admitted as an inpatient.

Inpatient care

Some people are admitted to a hospice or palliative care inpatient unit at an early stage of their illness for a short period of intensive care, for example 10 to 14 days, and they will then go home or to another care setting. It could be for rehabilitation after treatment, or to control their symptoms (for example, pain, nausea or vomiting). People may also be admitted to a hospice during the final stages of their illness. There may be room for relatives to rest or stay overnight.

Outpatient services

Increasing numbers of hospices offer outpatient services to patients including consultation appointments with health professionals, access to information and drop in services and rehabilitation opportunities.

See above for home care support.

Hospices work closely with colleagues in other settings such as primary care, care homes and hospitals to identify people who could benefit from their care and to plan and provide it accordingly.

Most patients are referred for hospice care by their GP or hospital doctor. A district nurse may also make a referral. Some patients are able to self-refer, although the hospice may wish to discuss the referral with the patient’s GP or another health professional.

Care home

Care (or nursing) homes, which are either privately owned or run by the NHS, cater for long-term elderly residents who are no longer able to cope on their own. Care home staff usually encourage regular visits from relatives and, supported by the GP, are happy to consult relatives on continuing treatment and care of the elderly person, especially when their health is failing. They do not usually provide rooms for relatives to stay overnight, but are normally happy for you to spend as much time as possible with the person who is dying.

Hospital

More than half of us die in hospitals. Hospitals are busy, noisy places which deal in helping people to get well. There are minimal facilities for relatives who want to spend extended periods of time with a dying person. You may be lucky enough for your relative to be put into a side-room. Insist on this if you can. Otherwise, your relative will be in the main part of the ward, which can add to an already distressing situation.

That said, a hospital may be the best place for your relative or friend to die, especially if they require specialised nursing care. Consequently, it is important not to feel guilty if, for example, the dying person cannot be taken home. If your relative is in a side-ward you will usually be allowed to visit or remain at the beside for as long as you wish. This may be more difficult if they are in a main ward.

Some people want to die if their quality of life has become intolerable. At the present time, assisted dying or voluntary euthanasia is illegal in the UK. For Dying Matters' stance on assisted dying, visit our FAQs.

However, it is possible to refuse life-prolonging treatments. This is done by making an Advance Decision (living will) and giving it to your doctor and to your next of kin. If you have not made an Advance Decision, and become so ill that you are unable to make decisions for yourself about your end of life care, your next of kin will be consulted by medical staff.

Many people make it known that they would not wish to be resuscitated or to receive life-prolonging treatment if their quality of life was to suffer due to a debilitating illness. For other patients, when it is clear to the medical team that treatment is not helping their condition and that they are beginning to die, the doctors will decide to begin to stop, or withdraw, these treatments.

In the case of an emergency admission to hospital, for example after a major stroke or heart attack, you may feel it necessary to inform medical staff about the wishes of your relative. However, it is important to understand that any decision about continuing or stopping life-prolonging treatment is the responsibility of doctors. They will respect the family’s thoughts and feelings, but they are not asking next of kin for permission to withdraw life-prolonging treatments.

It can be very upsetting to be involved in such discussions on behalf of a relative who is unable to make their wishes known for themselves. So, take your time to talk through any concerns you may have with medical staff, and also with other relatives and the GP.

Organising this is essential. It means nominating a next of kin, a close friend or your solicitor to take care of your personal finances, property and other assets should you become too ill to do it yourself.

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This content has been funded by Macmillan Cancer Support. It was commissioned as part of Find Me Help, Dying Matters' new online search tool which gives access to a comprehensive database of national and local organisations providing support and advice for people coping with death, dying and bereavement.